Saturday, April 16, 2016


This is the big one. The one I haven't wanted to write about. Talk about. Even think about. I kept saying I won't talk about his surgery until we have the date. Now we have the date and I have to think about it. 

July 8th. 

We are traveling to Cincinnati this summer for Jackson to have a Laryngotracheaplasty reconstruction surgery (LTR). They will cut out the damaged part of his trachea and take a piece of his own rib cartilage to reconstruct his airway. The top hospitals in the country do about 10 of these a year. Cincinnati Children's Hospital is the leader in the world for this type of surgery and they do 50 a year. We will go out the week before for Jackson to have a week of testing to see if he's a candidate. If he is, he'll have the surgery July 8th. Then he has to stay in Cincinnati for about 6 weeks to recover. 

I've had a weird relationship with this surgery for the last few months, looking forward to it with both hope and dread. 

It's been my last shred of hope that Jackson will get better and go back to his normal life. I've clung to it with all my strength. This is what we're working towards: keeping him healthy, getting him stronger, getting him to Cincinnati for surgery. And I'm terrified he won't be able to have the surgery. 

But I'm also just as scared he will be able to have the surgery. This surgery feels too big. He's already been through so much this year, how can we already be doing more to him? And what if it fails? When you've been holding on to hope so tightly, it's scary to let go. It seems too good to be true that the nightmare we have been through this year, could really be undone this summer. And aren't we always taught not to trust something that seems too good to be true? 

So I'm scared. I'm scared he won't have the surgery. And I'm scared he will have the surgery. But despite our fear, we're moving forward. We're making plans. On to Cincinnati. 

Jackson's driving the bus and we're along for the ride. 

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